Strong Local Voice, Strong Local Champion

Fifty People a Day Condemned to Blindness

Annette Brooke MP with Lesley-Anne Alexander (RNIB Chief Executive) next to a map showing which PCTs are funding the new treatment for wet Age-related Macular Degeneration

16,000 people a year in England are being condemned to blindness because health bodies are refusing to fund a treatment that could save their sight.

This is the shocking message contained in a report launched this week[4] by leading charities at a reception in Parliament attended by local MP Annette Brooke.

Primary Care Trusts (PCTs) are responsible for funding anti-VEGF drugs, the only treatments for all types of wet age-related macular degeneration (AMD) - the leading cause of sight loss in the UK. Currently, only one anti-VEGF drug is licensed in the UK - Macugen, which became available in May 2006.

However, the report, suggests that 90 per cent of PCTs have so far failed to fund the treatment[6]. Even when a PCT has given funding, the number of patients involved has been small. In a region covering eight PCTs, for example, out of 450 potential patients, only 36 received the drug in a three month period.

Annette Brooke said:

"I am shocked to learn that people all over England are unnecessarily losing their sight when a treatment is available that can prevent blindness through wet AMD. I will be holding urgent discussions with our PCT to find out whether they are providing this vital treatment for local people at risk of going blind through AMD".

Steve Winyard, Head of Campaigns at the Royal National Institute of the Blind

(RNIB) and co-author of the report, said:

"This report confirms what we have long suspected and what patients have been telling us: that PCTs are refusing to fund a licensed treatment, even though it could save patients' sight. Fifty people a day are being condemned to blindness - the actions of the PCTs are simply unacceptable."

Shockingly, the report reveals that most PCTs are waiting until a patient has lost their sight in one eye before considering treatment. Others are waiting for guidance from the National Institute of Health and Clinical Excellence (NICE), due in August 2007, before they fund the treatment - yet the Department of Health advised that patients should not be refused treatment on this basis[9].

The situation is leaving patients with the bleak prospect of either paying for private treatment (at costs ranging from £10,700 to £25,000 for a year's treatment[6]) or going blind.

And the situation is unlikely to improve in the near future, because most PCTs have not made plans to fund anti-VEGF treatments. This is despite the fact that treatment options are expected to grow: Lucentis, another anti-VEGF drug, is due to be licensed in early 2007.

The report from AMD Alliance UK also shows that leaving people to go blind impacts upon more than their physical health - sight loss has a devastating impact on mental and emotional wellbeing[8]. In some cases, the effect on quality of life is comparable to having cancer or HIV, the report shows. The sight loss associated with wet AMD and the threat of blindness also increases depression and the risk of suicide.

AMD Alliance UK is calling on PCTs to expand their services and provide speedy access to anti-VEGF treatments now.

Steve Winyard continued:

"Health officials are only fooling themselves if they think they can save money by refusing to fund anti-VEGF treatments. The cost to the state of supporting someone with sight loss far outweighs the cost of treatment.

"We have a real chance now to turn wet AMD, which devastates so many lives, into a largely treatable condition. But only if it is detected and treated promptly."

ENDS

Notes to Editors:

For more information, please contact Deirdre Good or Paul McDonald at RNIB Press Office on 0207 391 2223 (out of hours mobile 07968 482 812). Ref: 46.

[1]The AMD Alliance UK is made up of the Royal National Institute of the Blind, Age Concern England, the Macular Disease Society, NALSVI, Fight for Sight and the Wales Council for the Blind.

[2]Every day another 100 people will start to lose their sight. There are around two million people in the UK with sight problems. RNIB is the leading charity working in the UK offering practical support, advice and information for anyone with sight difficulties. If you, or someone you know, has a sight problem, RNIB can help. Call the RNIB Helpline on 0845 766 9999 or visit www.rnib.org.uk.

[3]AMD Awareness Week runs from 23-27 October 2006 and is organised by AMD Alliance UK.

[4]AMD Alliance UK report: Left to pay their own way: how people facing sight loss from age-related macular degeneration in England and Wales are let down by the NHS, by Barbara McLaughlan and Steve Winyard, RNIB is available at www.rnib.org.uk.

[5]Anti-VEGF treatments target VEGF (vascular endothelial growth factor), a protein involved in the formation of new blood vessels. In the eye, high levels of VEGF can cause proliferation of blood vessels and fluid leakage.

[6]The frequency of treatment varies, with Macugen being injected into the eye every six and Lucentis every four weeks. Trials continue to establish how long patients benefit from treatment and whether it is possible to discontinue injections or lengthen the time between appointments once patients respond to treatment.

[7]The figure of 90 per cent is based on a survey of the UK's 52 PDT treatment centres. It is supported by sales figures for Macugen and guidance issued by a number of local Specialist Commissioning Groups on patients eligible for PCT funding.

[8]A number of studies have looked at the impact of macular degeneration on psychological wellbeing. AMD Alliance International's Quality of Life in age-related macular degeneration: A review of the literature details a study of patients with macular degeneration in at least one eye, which found that participants reported scores on emotional distress comparable with those of people with serious illnesses such as cancer and HIV.

[9]In response to a Parliamentary question, Andy Burnham, Minister of State (Delivery and Quality), Department of Health, said, "Patients should not be refused a treatment simply because guidance from the National Institute for Health and Clinical Excellence is unavailable." Instead, the Department of Health expects PCTs in these circumstances to "take full account of available evidence when reaching decisions on whether to provide treatment".

[10]A map detailing the PCT results is available in jpeg format.